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Posted by on Jan 14, 2014 in Interesting | 10 comments

Lisa Bonchek Adams and writing about cancer

 

Lisa Bonchek Adams has Stage IV breast cancer and has been documenting her experience dealing with the disease. She’s tweeting and blogging, sharing the ups and downs, giving her readers a taste of her current life situation.

No big deal, eh? A person writes. Other people can read.

Well, everything changed this week when journalists Bill and Emma Keller decided they didn’t like Lisa’s tweets.

The brouhaha began when Mrs. Keller wrote this:

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it’s metastasized to her bones, joints, hips, spine, liver and lungs. She’s in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

“Dying out loud.” I’m not sure I’d describe Lisa’s activity as such, but to each their own…

Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest?

Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a “no visitors sign” on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?

From Mr. Keller:

In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

And this:

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.

Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

Now… as someone who has intimate knowledge of this whole cancer thing, I suppose I have a tiny opinion on this situation:

Nobody should tell Lisa how to deal with her cancer. Period.

If she wants to tweet, let her tweet in peace.

I’ve discovered there is a TON of misinformation about cancer floating around the Internet. For Lisa to peel away some of the mystery is likely a good thing. After my diagnosis, I searched high and low for even one tiny, reliable shred of usable, readable information and what I found was a ton of quackery.

I found a dude named Chris who used a crazy raw food diet to beat his colon cancer (funny thing is that he had surgery to remove a good portion of his large intestine after his diagnosis). I found a woman named Chris whose diet consists of all organic plant foods who “stopped” her cancer in its tracks. Only thing is she has a super-stable version of her cancer that likely won’t do anything for at least 15 years. Of course, both of these people are selling “make your body cancer-proof” information.

Then I found a woman named Jan who is raising money to pay for her alternative cancer treatment. Updates are sparse and discouraging. I have a hunch her blog will simply disappear.

Personally, I decided to not write about my cancer much. It’s simply too overwhelming. I can’t seem to put into words the incredible mind f*ck this disease is.

Which brings me back to Lisa. A part of me mourns that a large portion of our world can’t seem to handle the rougher realities of life. Another part of me gives her a tremendous high five for demystifying her treatment. I’m thrilled people are talking about this, perhaps quietly deciding what they’d do if/when they find themselves in a similar situation.

Either way, the decision as to whether she tweets, blogs, and Facebooks should be hers and hers alone. That said, Kellers are certainly welcome to their opinion. However, if they don’t like her tweets, perhaps they should remove themselves from her feed rather than make a difficult situation even worse.

More information:

From CBC

New Yorker

10 Comments

  1. Writer is a tremendous dick. Why didn’t she just post what she’s thinking – “why can’t you sick people die quietly and let me return to my life where I don’t think have to think about sad things”. Anything this woman can do to give her a coping mechanism she should take by the horns. There are plenty of people who follow her for a reason – either out of support or because they are curious about the realities of living with cancer. I know I did quite a bit of research through blogs and other “real people” experiences when my wife was diagnosed because I wanted a little honesty. Go Lisa.

    • Bob, you are my new hero. Your wife is a lucky woman. I hope she’s doing well. Thanks for your comment.

      • BethAnn everything OK. You haven’t posted for a while unless you’re tied up with you big project. Just wondering, I hope everything is OK . And, I don’t want any weather tales, god what a winter. I’ll tell my grand-grand kids, it.was so bad in the winter of 14, the drifts were so high we couldn’t get out of house until spring. up here that is June 18th.

        • Hey Peter,

          Thanks for your comment. I just had my new blood test… liver number is a bit wonky. Hopefully it’s nothing. I tend to feel pretty down after these things, it’s particularly bad this time because I’ve got a full battery of tests slated for early May… big time blood tests, colonoscopy and another CAT scan. It just goes on and on and on…

          Yes, I’m still writing at that big project. It’s time consuming and not very enjoyable. But it’ll pay for my medical bills.

          Life is rather… not fun… sometimes. However, I enjoyed your snow story. Perhaps I’ll live long enough to tell my great grand kids about the winter of ’14. :)

          You are a fortunate man. Hug those kids.

          Beth :)

          • Hang in there BethAnn. I known you’re depressed and it is hard to relate unless you’ve been through that situation so I won’t offer any empty whatever’s other than drink your fruity beer! Yes, I will give my grandkids (2) a big hug. They’re coming to stay overnight today and they love coming here rather than their other grandparents for reasons I won’t go into. Probably because Papa is such a soft touch. Take care, Pete.

          • Thanks for your kind words, Peter. I’m beginning to feel better again. It comes and goes in waves. I hear that’s normal. I’m on the verge of dropping my big copywriting client, there’s more to life than that stress.

            Hey, I found a new fruity beverage you’ll have to try: Mike’s Hard Lemonade. I discovered it during my recent trip to NYC. It’s a real kicker. Give it a try sometime. :)

          • Ha, my brother-in-law, his wife and me and Darlene got into the hard lemonade about two summers ago when they came from Winnipeg. And a fine time was had by all. Sometimes I buy it for Darlene during the summer but I stick to beer. Found a new one: Belgium wheat beer. Strong but excellent.
            I don’t blame you for dropping your client, who needs the aggravation. I did it for a while years ago as well as speech writing but it was a hassle and sometimes trying to get
            them to pay up (especially politicians) wasn’t worth the effort, I have better things to do. Forget it and enjoy life and I promise summer is coming some year.
            I wanted to comment on your latest post but I do have mixed feeling about but we do need the research as you so aptly expressed However, I have no truck with those animal rights anarchists who think it’s ok to potentially kill a human with an IED to make their point.

          • Yes, the hard lemonade is divine, particularly the cherry lemonade. Ha. I’m really getting into the hard stuff. :)

            Client: Ugh. Yes, they’re tough. I’m likely going to drop ‘em tomorrow. I guess the saying is true: when you take on a project solely for the money, you earn every cent.

            Animal post: Yeah, I hear you. I thought long and hard before I posted it. However, the I found the language and persuasive techniques far too enticing. It’s been interesting keeping the conversation geared towards the communication aspect, though. That was a powerful vid, it’s a pity the researchers don’t have one to counteract the damage done by the activists, who evidently ran a very successful campaign. So far, the researchers’ side of the story has been buried under a brouhaha of, well, camera licking. Either way, I figured if I could learn something from that event, I should share it.

            It’s a fascinating, complex subject. I suppose that’s all most people can agree on.

            Thanks for your comment! I’m holding you to your promise that summer will eventually come…

            Beth :)

          • I meant to mention when you talked about dropping your client and about paying your medical bills which must be astronomical. It’s too bad you don’t live up here where our “socialized” health care system would pay the bills. Any relief from Obamacare? Then again you could always do what Sarah Palin’s father did. In a speech she bragged they went to Whitehorse, the Yukon, to get free Canadian medical care. The only way to do that is if her dad bought a counterfeit health card. (They used to cost around $250-500 years ago in Toronto). And, I don’t remember any journalist, Canadian or American, picking up on this. And she is a rabid opponent of government assisted health care? What a hypocrite. I don’t know if things
            have changed because today we have photo-id health cards. Anyway, take care, Pete

          • Ah, health care. We have insurance and haven’t noticed any changes since Obamacare got approved, aside from all the grousing on Fox news. Yeah, the bills are high, but I guess that’s how it goes. I haven’t had to go back to my client’s office this week… tomorrow. I’ll likely turn in my resignation.

            I got a new bicycle that needs breaking in. I read that regular exercise lowers my risk of cancer relapse. It’s worth a try, kinda fun, too. I might even ride up and down my snowy street. :)

            You take care, too!

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